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Discussion Starter · #1 ·
Wow! A lot of visits. Still, better to have them for piece of mind.

Lesley, sorry to ask of this, but could you please give me as much detail as possible as to what specific tests/results were involved/looked at to establish organ involvement. I'm tearing my hair out with worry right now.
 

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Bloods, they normally test for liver/kidney and urine!

Lesley
 

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Hello Surferboy

Organ involvement is often ( perhaps mostly) suggested initially by symptoms. That's why it is important to report all health problems. Then various tests will be done to determine the cause of those symptoms. Some sorts of organ involvement show up first in lab tests or maybe accidentally in imaging tests, or perhaps physical examination.
The only actual organ involvement I can think of right now that might only emerge through lab tests is kidney disease, which usually only shows physical signs when is it already developed but is often first detected as a possibility in abnormal blood work and urine.

Perhaps blood abnormalities that are, or could, put a person at risk of problems, could be included in that - various anemias, coagulation problems for example. Physical examination could detect abnormalites such as heart or lung conditions.

As with any lupus symptom severity of organ involvement varies enormously. The aim of timely treatment is stop permanent damage. I think I have read that that studies have shown that some degree of kidney and lung involvement is almost universal, but many patients might never experience any signs of it.

The post diagnosis period is very stressful as we have to deal with the unknown and uncertainty and very understandable fear as well as an overwhelming mass of information. We also have to be very patient waiting for test results and giving ourselves time to absorb whatever there is to absorb. Don't let your fears run away with you !
I always say, know where the bridges are or where they might be but don't cross them until they have to be crossed. We can make ourselves sick by fears that turn out to be ill founded. Try to curb your imagination and don't build huge constructs from itty bitty items of information.
Make sure you have reported all health problems to your doctor even if you don't think they are lupus related and make sure all the relevant tests have been done. Then make sure they are regularly repeated as advised by your doc. if there are any signs of kidney involvement for example, clearly a very close eye needs to be kept on kidney status. Know what the signs of increasing disease activity might be.

It's a good idea to start a new thread for each separate topic so that it's clear to readers that there is a new topic. Many people don't go back to a thread they have already responded to. And as it's a forum anybody can reply to any question. They might have said all they have to say about ds DNA but many people can tell you their first signs of organ trouble and how it was detected.
So I have started this new thread on the Symptoms section.
T
he only worrying development I have had over the years, was the appearance of certain antibodies that might cause clotting problems but as I had had none of the possible associated symptoms I was put on 75mgs aspirin a day to try to help stop any associated events. I once had anti ds DNA antibodies at slightly above normal levels but never again and regular urine testing has never shown any signs of kidney disease. Disease expression varies enormously from person to person and little is known about why this is so.

Cheers
Clare
 

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Discussion Starter · #4 ·
Thanks Clare for moving the post and for your reply :)

May I ask one (no doubt of many more) more question please... Is lower back pain and/or inner thigh pain a possible sign of kidney involvement?
 

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not always, but if you have those symptoms always get checked out!

lesley
 

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Hi,

Mostly lupus nephritis is asymptomatic in the early stages. So no symptoms - it is detected through abnormal results on the U&E's ( a blood test) and urinalysis. High blood pressure also happens quite early.
Later symptoms are fluid retention, skin itching, nausea, reduced urination (or sometimes inability to concentrate urine), but mostly the doctors and the patient are well aware by this stae that their kidneys are failing. By the way with modern treatment the majority of people with renal involvement do not progress to renal failure and if they do transplantation is very succesful.

So, lower back pain/ flank pain is NOT a symptom of lupus nephritis. It can be a symptom of a urinary tract infection or renal colic though. These are unrelated to lupus, but if you are having symptoms it needs to be investigated. Remember that having lupus is no protection against geting other things, and that not everything you will get from now on will be caused by lupus. Sounds logical, but I have to remember it myself too;)

X C X
 

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Discussion Starter · #7 ·
Oh oh! skin itching? I have severe itchy skin - especially on my chest and rib cage area, upper back and shoulder area.
 

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Sorry to confuse you. The skin itching is almost certainly not renal related for you. It only happens with renal failure when the urea gets very high in really end stage renal failure, and your doctors would have jumped up and down in panick and admitted you for dialysis if your urea had been high, so chill - it isn't your kidneys:wink2:

Itching is pretty common in lupus although it seems not to appear that ofetn in the symptom lists. Mostly it is simply the lupus affecting the skin, and less commonly causing vasculitis of the superficial blood vessels.

All the best

X C X
 

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Surferboy:

I think Clare is right not to cross any bridges, wait it out and see what the Dr's say.

Once you finally have a lupus DX, they are pretty aggressive in testing for everything and re-testing often.

If you worry, you will create stress for yourself and stress = flare for most lupies.

I know the unknown is hard yo cope with, and ignorance is not bliss for us, but don't imagine symptoms that don't exist.

Stephanie
 

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Surferboy;515500 said:
Is lower back pain and/or inner thigh pain a possible sign of kidney involvement?
Have you considered that you may have a groin injury, quite common in a sporty person like yourself!

I have a ligament that never retracted in groin area (happened during a pregnancy). This is what they suspect is causing my lower back pain -also get pains on inner thigh too!

Remember not everything is due to Lupus, in fact all other possibilities should always be discounted before they decided pains/symptoms are related to lupus.

If the pain is still bothering you the get the GP to check it out!

Lesley
 

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Discussion Starter · #11 ·
LOL @ Greenhaggis's comment about groin injury :) Alas, unfortunately I have not participated in any sport for a couple of weeks due to my flare :(

@ Stephanie - Since being diagnosed the Dr's have been the exact opposite of aggressive in getting further tests done. I think thats the most infuriating and worrying thing for me right now :( Things may need to be done... but just aren't due to dr's being slack. Thats why Im taking it into my own hands now :)
 
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